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My mum sent me this because I think everyone is a bit concerned I’ve been overdoing it the last couple of weeks 😂🙈 I went for lunch with my dad today to speak about treatment plans etc and he has asked me to ask you guys these questions - I wondered if anyone has had mercury fillings removed or had chelation treatment for heavy metal poisoning? If so please message me! I also wondered if anyone has been treated in Germany for anything to do with the health problems I have? Please message me if you have 🙏🏼💖

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Day 12 of “Spoonie Christmas Challenge”: hospital selfie. 🏥 I haven’t taken a lot of hospital selfies over the years, it’s usually pictures of bloodwork or weird signs in the hospital that I’ve taken haha. 💉 My mom had a bunch of pics from me in the hospital the year I got sick but I think I got her to delete them cause they made me anxious to look at (ptsd). I upload any health-related pictures (that are no longer relevant to my daily life) on a folder on my computer and then delete them from my phone. I think because looking at these pictures makes my heart sink a bit. I’m a cheerful and extroverted person with a big smile on my face even when I’m not feeling well (it’s just my personality, it doesn’t mean I’m necessarily feeling happy) so when I see pictures with tears in my eyes (like this one from 2 weeks ago 👆🏼) it doesn’t seem like the person in the picture is me. I accepted my illnesses long ago but realized that I totally separate my life into “sick me” vs. “healthy me” and my counsellor has been working on this with me a lot lately. I used to think it was odd when people used the language that they were healing from chronic illness because it sounded like it was possible to cure all chronic illness based on lifestyle changes alone (it’s not). But lately I’ve been loving this language because even if I experience the same degree of symptoms for the rest of my life, this language gives me back authority. ❤️ I’m healing right now. What will the outcome look like? Perhaps radical instant healing from God, perhaps slow healing from Him that isn’t linear, perhaps I won’t see any change in symptoms as long as I live but I’ll be emotionally healthier, perhaps a cure for POTS will be found, who knows! Either way, I am sick and I’m not in denial about that, but I am healing and I prefer to put my focus on the healing part. Everyone’s journey, and way of coping, will look different. Some people make art out of their hospital bracelets (so cool!) or get awareness ribbon tattoos to commemorate their strength. That is equally as valid and healthy. Neither is better, neither is worse. ❤️

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Port surgery went well! Thank you to all those who reached out and sent their love and support! It means the world to me. Below, I share one negative aspect of my experience in hopes that others may have better experiences..

Unfortunately, I found out the hard way that local lidocaine doesn’t work very well on those of us with EDS type 3..

I had always known that it took a lot of lidocaine to get me numb for dental work and even then it was still really painful. But I just assumed that was normal. I had also heard that EDS hypermobility may be responsible, but never really looked into it. So I told my doctors all this prior to my port placement and they assured me that they’d be able to get me numb..

They maxed me out on pain meds, but it still hurt quite a bit and when I sometimes flinched from the pain, they’d reup the lidocaine. It wasn’t a bad experience and the team who placed the port was excellent and extremely caring. But by the time they were sewing me up, I was in a lot of pain and could feel basically everything, but through a versed fog..

It wasn’t until I got home later and did some googling that I realized that I had been in more pain than I should’ve been. Lidocaine and other local anesthetics just don’t work well for those of us with hEDS. They’re not sure why, but they think it’s because it doesn’t stay in the tissues it’s supposed to due to our connective tissue issues. Anyway, I’m sharing my story for two reasons 1. Because I think doctors need to be better educated about this and the burden to do so unfortunately often falls to us patients. And 2. Because I wish I had spoken up and better advocated for myself. I should’ve asked for more pain meds instead of sucking it up. As women, we often worry too much about the repercussions of speaking up. But, studies show women’s pain is often not taken as seriously as men’s. So in order to have our pain managed, we really need to speak up, otherwise people assume we’re fine..

Not saying any of this is right. Far from it. But I’m thinking practically about how we can all get better care. 💚.

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Okay, so I know a lot of us have seen this big, scary study in the past week or so. The results of this study tell me I already (at 23 years old) have a 38% higher chance at having #breastcancer than someone who hasn't been on the OCP for the last 10 years. For a lot of us #endosisters we just have no other choice. So, while it is helpful to own available information and use it to make informed decisions about our care, a life without being on the pill for me is a life with very low quality. What can we do with this info right now? Having a family history of Breast Cancer, I'm going to be proactive in checking my ( . Y . ) at least once a month, and am planning to start regular mammograms earlier than recommended. I've been having intermittent pain in one of my #boobs for a little while and even though my GP handed me a referral for an ultrasound, I've been avoiding it because frankly, I'm OVER going to the doctors. The results of this study have encouraged me to get off my butt and do that just to be safe, but I refuse to be scared of this statistic to the point that I stop taking the OCP. It has given me a far better run in terms of my #endometriosis and #adenomyosis and it has given me control in deciding when I have to suffer through a period. So let's all take this information into account wisely, but let's not be scared away from utilising a pill that can greatly benefit our disease experience.

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Chronic Illness's twisted sisters: anxiety and depression. Life in good health has enough hassles, but when you add going in to battle against your own body into the mix it can cause your mental state a whole lot of grief! I've been working with a psychologist lately to address some mental health issues and a huge thing I've been unpacking is my tendency to try and over-control circumstances (and I know I'm not alone here). It's a natural response for somebody who is going through some form of trauma that is outside of their control to try and compensate by gaining control over something else. For me, I grab on with both hands and cling to comfort: by controlling my environment, who I spend time with, how my schedule runs, etc. Sometimes when you have an illness it's necessary and even healthy to plan well to get through the day and stay standing, but it's hard not to go too far and send yourself into a spiral of stress at the slightest hiccup. Another aspect of #anxiety I've been unpacking recently are my #thoughts. Through recording my thoughts I've discovered that almost every single anxious thought is me making a #prediction about the future: "I'm always going to be sick" or "I'm going to end up all alone because so and so won't want to always be looking after me." It has been really hard to break free of this, particularly as I have been hurt by my body, life and people in the past, but identifying these patterns also empowers me to take my thoughts captive and change them into more realistic or helpful ones... ie "I might have ups and downs, but look at what I've come through just fine" or "look at the great doctors I have on my side now" or "look at the awesome people who have stuck by me through this and love me so well." Medications can definitely do their part in disrupting cycles of anxiety, calming the nervous system and giving you a rest when you need it (my anxiety tends to manifest in a very physical way which can put more strain on the old wonky body) but talk therapy has been the most helpful thing overall in beginning to resolve these things for the long term. How do you deal with #anxiety? What has helped the most?

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Busy Wednesday night and not sure what to make? Zuchinni noodles to the rescue! I like to make meatballs over the weekend with my Always Perfect Red Sauce Recipe that you can find on my blog, and keep them in the fridge for a quick meal. After sprializing your zoodles, dab them off with a paper towel (so they don't get too watery when you cook them), then saute them in a pot or pan with olive oil, grass-fed butter, or ghee. I also like to add some fresh garlic and basil :) Check out maryshackelton.com for more of my Naturopath-approved recipes!

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Healing elixir! I love you 😍 Mr. Celery Juice 🌵🌱🌴🐲🌴🌴🐲🌴🌿🍃🌳🍀☘️🌲 Who else is deeply in love with their celery juice boyfriend/girlfriend ?? 😂😂 A lifelong love ❤️ that will never even wane 😍💛 Thankyou @medicalmedium for introducing me to this beautiful healer ☘️🌴🍀

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My days have been completely consumed with this little guy! Meet Devlin, a 4 week old foster kitten with CH (aka wobbly kitten syndrome). He’s had a super tough go at life thus far and I am so honored I can just give him some love. He has completely stolen my heart!

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Planning a woodfired or charcoal feast on Christmas Day? Grab a Schedule 10 permit from your local council now, just in case the weather turns hot again. Total Fire Bans rule out solid-fuel outdoor cooking unless you have a permit. So make a plan B or apply for a permit today to make sure your Christmas plans can go ahead without a hitch. #bbq#food#cooking#bushfire#safety#adelaide#cfs#volunteers#christmas

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I'm sure you've all read about how I've been wanting to look like the 'old' me for so long and I think I can finally say that I've done it! I thought I'd share this photo with you which has been my ultimate motivation to get back to how I want to look/the weight too!• • •The photograph on the right was taken on 31st May 2013 so there's just over 4 years difference between these two pictures and obviously during this time has been when I've struggled the most with my health, been up and down with my weight & on a mixture of different medication. I remember when I was at my heaviest in April this year, I saw this photo and cried because I couldn't believe that I was once this slim girl, a lot younger of course but I couldn't believe the difference! I've kept this on my phone for quite some time and I look at it every now and again but not obsessively because I knew I'd make myself frustrated! My weight here was roughly 10st 4lb so I'm just under that weight again now! This was another reason why I reset my target to 10st 1lb because I knew that this weight would be good for me to get to again! It's kinda crazy and a lot has happened in these 4 years but I'm now a completely different person again! This journey truly is life changing and despite all of my difficulties this has definitely helped my healing process! I was speaking to my friend Katie earlier and she said to me that my SW journey has been my medicine and it really truly has been!💗😘✨🤗• • •Left: 6th December 2017 (10st 2lb) vs right: 31st May 2013 (10st 4lb)• • •#SlimmingWorldUK#SlimmingWorld#SlimmingBlog#WomanOfTheYear2017#WeightLossProgress#Journey#SWBlog#FoodOptimising#FoodDiary#Fitness#SW#SWIdeas#SWFriends#WeightLoss#WeightLossJourney#SWRecipe#SWVegetarian#Club10#3AndAHalfStoneDown#Support#Motivation#WeightLossMotivation#Strava#MyFitnessPal#SWMafiaUK#ChronicFatigueSyndrome#CFS#MyalgicEncephalomyelitis#ME

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Hang in there, friends! You are ALMOST FINISHED! #CFS is rooting for you! (And don’t forget that our offices are on the second floor of the Student Center if you need a place to take a deep breath in between things.)

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No one. Anything. Ever..Stop feeling bad for being who you are. Stop feeling bad for your emotions, decisions, lifestyle, or interests..If you disagree with a decision a doctor is making - tell them. If you don’t want to do something your girlfriend is doing - you don’t have to. If your mom makes you feel bad - keep your distance. If you want to try something taboo - try it..This is your life. If it feels good - chances are it is good. If other people look at you like you’re crazy you’re doing something right, beautiful humans.

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Today I did too much. I need to focus on pacing and concentrate on that. Today I was over tired, emotional and irritated.

You know when your in one of those moods? Headaches, pains and fatigue and then the fire alarm starts beeping. The phone never stops and there's jobs to do.

After 2 hours I decided I needed to take myself away and regroup pull myself together. So I tried to do that....andddddd....the coffee machine broke 🙈 so then I had to spend 20 mins fixing it and I didn't get my brew.

Tonight I've been home, had a glass of wine and relaxed. Tomorrow morning I have no jobs to do so I'm going to have a relaxed morning and look after myself. Then i can get my emotions under control and get in the right mindset before back to work.

Draw a line. Move on. Rise above it. Focus on self care. Do some meditation and get back in the game 💪